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DS13's flares are strongly correlated with urinary accidents. Seems to be a precursor to an impending more dramatic onset of the traditional OCD flare. What is the mechanism by which this occurs?

The answer was posted. I won't give it away but you can follow that link above and click over to the solution.

Also to the success storytellers - please don't leave the forum! For those of us still in the woods, we desperately need your wisdom!

Sounds like an allergic reaction to something. Keep us posted and let us know if you find out to what?

Happy you have a plan cara! Please keep us posted on everything!

Would also say that we have had multiple times, perianal strep. It also presents as bright red. DS complains more of pain than itch when he has perianal strep. Of course we've also had yeast and that results in similar red but an intense itch. Lastly, it could be compulsive wiping or allergy to some product that makes things come and go.

A basic work up is certainly in order. You should ask for your child and siblings to be screened for strep via swab and blood work. However, as said, PANDAS is strep triggered but PANS is anything. Mycoplasma, viruses like the ones you mentioned and a host of others, and lyme all seem to be big players. There are also allergies, environmental and food, to think about. You may wish to screen for autoimmune markers as well. I would request a full screening/panel of bloodwork to get started and go from there. Know that you are not alone. There are so many of us dealing with exhausting situations. This forum can be a lifesaver. Please keep us updated.

Wow sf_mom that could be something. We do have a confirmed problem with aspergillus in the house!

Hi Pow Pow, Yes, this will be his first IVIG. We were able to manage via antibiotics for several years. However, since September he has tanked and is flaring more often and more dramatically.

I should mention, we know we have some other autoimmune issues in play already. Anti-adrenal antibodies were detected and transient thyroiditis. His hgbA1c is normal but always on the high end of normal. He's never been tested for arthritis despite intermittent (with flares) complaints of joint pain. He was given a diagnosis of autoimmune encephalopathy and has low IgG and subclass IgG3. We will pursue IVIG in June.

Hi Everyone, Anyone know anything else about tissue transglutaminase IgA? DS13 tested high out of the reference range. It's a marker for Celiac and so we are now gluten free. Traditional medicine suggests confirming a diagnosis of Celiac via biopsy which we will not do - especially since we were going gluten free anyway. But the uncertainty still has me wondering. Some reports suggest other autoimmune conditions can raise ttgA. I am wondering if I should pursue even MORE testing or just assume Celiac. Or could chronic NSAID and antibiotic use inflate the marker?

As per usual, I realize no there are wide differences in response to IVIG for a variety of reasons. Have read up on the various IVIG options. One, two, monthly. Have also heard various stories regarding various agents used. When we say IVIG, we can mean a host of different approaches. Does anyone have any knowledge in this area? as to what seems to be the latest greatest safest? We are considering this route since now DS IgG has very steeply declined.

Thank you quannie and 3bmom. I like both your mottos/mantras! I do feel hopeful surprisingly. We enjoyed such a nice "normal" last several weeks but then a cold and then a broken bone! I just thought to myself, "really?" But now i have to laugh and just press on. DS is somewhat better today. He's a bit understandably depressed about his situation but the intrusive OCD has lifted somewhat - at least for now. Have not tried anit-virals. Had one doc say his coxsackie titers were high enough to treat but then another say that's not worth it. I do truly believe DS is just plain overloaded. He can handle allergies. He can handle a cold. He can handle stress. He can handle exposure. But when they are layered upon each other-- it's too much. The inflammation and responding chemical changes are very apparent. His immune system is tanking as a result. He's worn down. He even tested positive for anti-adrenal antibodies. So I know his body is fighting itself. Agree with the glutamate connection and the histamine connection. Have read all these threads with interest and have always believed in these theories. I think that is the reason he responds to glutamate modulating antibiotic therapy. It's not necessarily an infection we are treating but rather the result of the infection- viral or otherwise. We are as of this week gluten free. He just tested high for tissue transglutamase IgA which is a Celiac marker. I need to read more on this and am awaiting labs to be mailed to me so I can see what else that may mean. My plan is to add dairy free after this adjustment. I do appreciate everyone's support. It's like a life line!

I am by no means any expert but have found that DS12 responded to a change in antibiotic regimen. He was on zithromax and in the past always responded well. But this last go around (the last several months he's been on again off again sick and thus on again and off again flares), he responded very well to the addition of Augmentin. It was almost an immediate response. Though of course he's been on both of those for 5 weeks and then now is sick again and on top of that broke a bone!!! So we are flaring again, despite the antibiotics. Our Dr. says ibuprofen 600mg three times a day during flare. Ds weighs 100 pounds. I completely understand your pain. Believe me!

Thank you Nancy. I think we are going to need something like Lamictal, at some point, until we can get his immune system stabilized and/or until we make it through puberty. He has really tanked with his IgG dropping 200 points in just two months. His system is just completely overwhelmed. I appreciate your insight and advice. It gives the rest of us such hope when you post your positive results and continuing success. I have read extensively about lamictal and do believe it may be helpful, especially when all else fails in the short term. I am nervous about side effects, especially headache and insomnia as those two seem to be a problem during flares anyway. Thank you again!

Thank you so much for your support! It is what I am trying to hold on to. There is no doubt that he is learning such valuable lessons and will truly be an amazing compassionate adult. But it's so difficult as you know. What is really challenging is that you can be so normal, even joyful for some time, and then boom. It comes back. Can you tell me about your experience with lamictal?

I just thought I'd share. We were doing well for 5 weeks. As of this week DS has a broken bone, and a cold. You can imagine the result. This journey is difficult. For the older tween, I think the most difficult part is the isolation these flares bring. I feel like I am hiding my child. He is not able to communicate with his friends and neighbors in the way he normally could. Every time he flares, they now notice the dramatic changes. He is a completely different person. Before, you could chalk it up to "kids being odd." Tics, some OCD but he could hide things more easily himself. Now, he is truly suffering from mental illness. He can no longer control it when flaring. And the stigma attached to that is overwhelming. I am more upset to think that people will readily accept a biological or environmental insult as explanation to paralysis , but yet they think its not possible when it comes to wide mood shifts, debilitating OCD, paranoia, rage. So for now, we hunker down and wait for this flare to pass. Recent labs show no immune system. His IgG has dropped very low so IVIG will be covered. He remains on two antibiotics. We have sent for MTHFR test. We will address mold issues in the house... It all takes time. And in that time, I fear he will lose his friends, his neighbors, his community. But I suppose we need to press on regardless. We are using therapy to cope. I may consider adding Lamictal though I am scared to do that. We'll be okay. It's just hard, really very hard.

Curious if strep is an identified trigger in him? or is he more PANS?

Dr. B is more interested in lyme than he used to be and works with an LLMD on the more difficult cases. Dr. T will test but has acknowledged that he doesn't know much about how to treat lyme.

Please remember you are human too. The crazy part about this syndrome is how it can hit you in the gut so abruptly. It's almost more difficult because it goes away and then comes SLAM back into reality. Tortuous actually. No one gets better at handling this. We just do the best we can- when we can. But we are human. And our kids are human. I've had to check myself daily in my reactions to both children. Even if my PANDAS son gets upset, I first think PANDAS!!!! and then I remind myself that he is human. He is going to have to be allowed to have a full experience of human emotions and reactions- without me reaching for the bottle of motrin. They change so much during these younger years as they grow into teenagers. We are almost at a disadvantage as we look too closely. Other parents would just chalk this up to nothingness. Of course be on top of this. No guarantee that things all PANDAS won't pop up in your other son. But just remember that he is probably experiencing a similar amount of confusion and stress - and he has no idea how to interpret it. Spitting at the sink? We've all done that!!! Boys especially, impulsive! But then he was punished (its right to set limits) and he probably added that as a layer into all this confusion. I must be bad. I do bad things... I want the forbidden fruit... Hang in there cara!! We have ALL been where you are today. I may be there tomorrow myself!

Hi Cara, I have one PANDAS/PANS son and one non PANDAS/PANS son. They are 2 1/2 years apart. When you have a PANDAS/PANS child it changes who you are and how your perceive things. I look at the world differently. I monitor the children in the school, the grocery stores, and at sporting events. It's a hyperactive awareness that is actually quite necessary to remain vigilant in this journey against these types of issues. So I would have done exactly the same thing as you and completely freaked out! In fact, I have been tempted to diagnose my younger son because there are days that he is off kilter. Days, that he does something strange or says something concerning. Lately he's been walking around shooting pretend basketballs. He's always practicing his "moves." I thought, "oh no!" Then I realized he's just being a kid and half the kids on the street do this. When they are sick, they can act even more strange. And they are indeed little sponges that can read your emotions. While you can express yourself through words and writing - they can't. They have these intense emotions, and have no idea what to do with them. He's 6 and he's been sick. He knows you are upset with the situation regarding his brother. He was also punished (and spitting on the mirror was impulsive? or was that because he didn't like himself? - which came first?). I would absolutely monitor things because studies do show a likelihood and he has strep. But I would remain calm also. They are going to go through a lot of stages and ages and a lot of changes and weird behavior and high emotions. Not everything is PANDAS. But do stay on the look out. I might also make sure that he DOES come to you with unusual feelings. He's got to be able to talk to someone so that he can process these thoughts. I imagine the stress level for him is also fairly high. I wonder if he feels "bad" because he brought home the strep. Kids can overhear things or sense things even when its not said aloud. He's just six and might be feeling really mixed up about all that is going on.

So many factors. Our pandas/pans doc doubled our azith and added augmentin until further notice. He was doing well and is still on this regimen. Will also start digging into allergy component as well and this doctor does believe that you should try to treat underlying infection and allergy prior to IVIG but they all have different opinions. My son came home from school today, "mom- I have a sore throat..." I hate this too!

Thank you for sharing this information!

Thank you maryaw. I will read these in detail tonight! Honestly I'm driving myself nuts at this point. We'd like to be dairy free, gluten free but also maintain an anti-yeast, anti-inflammatory and now a low histamine diet that still enhances/builds up the immune system. Good gracious. Give one thing for something and it causes a problem with something else! Dizzying! That being said, I've always felt we had a histamine overload as previous to this year our worst flares with alway in the spring.

Did the 23andme offer evidence/explaination of problems with O3?